I HATE myself!

Mom2Sarah

I have a call into my oncologists office, but I've been on Tamoxifen for a month now. I can't do this five years. I will be in a mental institution or divorced if I have to keep taking this. My emotions are all over the place and I feel like I'm constantly on edge. I literally hung up on my Dad this afternoon because he took a call on his cell phone while talking to me and then I had a complete meltdown. Surely I have other options, because I can't and won't do this to my family.

Mavericksmom

Been there, felt the same. That was in 2003. I ended up not taking the Tamoxifen or anything. I had 15 1/2 years cancer free. Then in Dec 2018 I was diagnosed again with ILC. My medical oncologist wants to put me on Letrozole, an aromatase inhibitor. I'm refusing that too.

The point is you have choices. You also have thousands here for support! Don't hate yourself, hate the cancer, hate the Tamoxifen, but not yourself! Please? Sending you a cyber hug because you need a hug!

Sometimes doctors make us feel if we don't do exactly as they say, we are doomed to die of cancer. I assure you that isn't true! Tamoxifen made me feel crazy. I know others have had the same reaction.

What type of cancer, grade, lymph node status did you have? Your doctor May have other options, but if he or she won't listen, get a new medical oncologist! You deserve the best and that only happens when doctors and patients work together.

Hang in there

Sunshine_On_Water

I began on the 20mg dose of Tamoxifen about five weeks ago. Within days I felt like a hormonal 15 yo ready to tear a strip off anyone who breathed too loudly. (Which my husband said "Too loud? I think you mean "at all". I was NOT amused. lol.)

Anyway, my fibroids were unbearable, migraine's, dry eyes, nausea -- every PMS symptom in the book.

So I stopped taking the Tamoxifen. When I felt 'normal' for about a week, I took some advice from posters here and tried just 5mg (figuring it was better than nothing). Felt wretched for about 10 days but then had improvement. I bumped up to 10mg, felt wretched, then improved. I will try 15mg after Easter and see how it goes. I can't say I am symptom free but I have yet to be arrested for attempted murder so I think I will see where I can go with this system.

Have no idea if that might work for you or others, but thought I'd throw it out there.

Mom2Sarah

Oh my goodness Mavericksmom, you made me cry, but good tears! I don't have any of the other symptoms (hot flashes, night sweats, joint pain)? So I think I was trying to push the hormonal/emotional part aside and think, I'm doing great on this medicine. But today, I realized I am not doing this anymore. I am not doing this for the next five years. I deserve better and my family deserves better. I was diagnosed January 3rd with stage 1 and could have probably gotten by with just a lumpectory, but given my family history I said BMX, hands down. I was SO fortunate and didn't have to have chemo or radiation (guessing due to my agressive surgery) and went straight to reconstruction and Tamoxifen. I always had some issues with my hormones/PMS before, but this is like gasoline and fire! We'll see what the oncologist comes back with, but I'm not doing this. They need to come up with different options. And it doesn't help that I've gained weight, I can't seem to lose the weight and I just feel miserable! But I'll figre this out too.

Like you, I am my own advocate and I will stand up for my feelings. I've made it this far, I'm not going back. Thank the good Lord that I have a wonderful husband who is SO wonderful and understanding that he just rolls with it.

But thank you ladies, and yes, I need to hate the cancer and not me. I'm better than this and I'll make them get me something else until I feel normal again. Well... as normal as I can be. Haha!

Mavericksmom

Mom2Sarah, sorry to make you cry, but glad they were happy tears! Please keep me posted on how you are doing!

We are more alike than I realized. I went to a cancer hospital for my current cancer, and had a mastectomy with DIEP reconstruction. Because I had so many mental issues the first time I had cancer, I wanted to be proactive this time. The hospital arranged for one of the oncological social workers to meet with me. She was amazing, she even sat in on some of my doctor visits. I had so much less stress this time and it was because of this wonderful social worker. (And no Tamoxifen

I gave her a special journal notebook that said “Social worker, because badass miracle worker isn’t an official job title!” After I gave it to her I said “thank you for helping me, I feel normal again....well, as normal as I can be!” When I read the last line of your post I laughed and thought, “yep, she is a younger version of me!”

Thanks for the smile! 😊

Mom2Sarah

I think Sunshine_On-Water put it best, you feel like a 15 year old with raging hormones again. And what is worse? I know I feel that way and I hate it. I was in such a dark place last night, it was insane! And please understand, not so dark that I would have done anything? Just dark that I thought, how do people live like this every day?? That is not my nature at all. I'm a very outgoing, bubbly person. So I'm waiting for the oncologist to call me back today with some suggestions. I see my OB tomorrow for my yearly and I'm going to mention it to her too. Bottom line, if I have to stand in the oncologists office and scream to prove to them I'm crabby and they need to fix me? That's exactly what I'm going to do! Haha!!

Mom2Sarah

And what's worse? I have two good friends who can't wrap their brains around any of it. One told me to slow and process. Try meditation, it's just a thought in your head for a few. Yeah, I wanted to snap his head off! Lol! Another one said it takes time and maybe give it a few months and try lavender. I've got your lavender! Until you LIVE with this medicine and these feelings? You have no idea!

buttonsmachine

Mom2Sarah, I want to tell you something from my experience that might help. Of course everyone is different and I totally understand/respect people who just can't tolerate the side effects of hormone medicines.

When I first started Tamoxifen I felt HORRIBLE. My nurse practitioner told me that sometimes these side effects level off in a month or two. I didn't believe her at all, but I stuck with it, barely. Well, after two or three months, things actually did normalize, and I felt more like my normal self. Later I had to switch to ovarian suppression and AI's - I reacted in a similar way, only worse. I had a massive crash, and now, about two and half months in, I'm starting to feel more like my usual self again.

I just wanted to share that because I had all the thoughts you did - I thought, "I can't do this for five years!" But what I didn't know then, that I do know now, is that sometimes the hormone crash at the beginning is the worst part, and then things really do normalize. I hope that's the case for you.